Generators
The ALS patient is dependent on numerous pieces of medical equipment (oxygen generators, suction equipment, ventilators, cough assists, nebulizers, dialysis equipment, refrigerators for meds and
The ALS patient is dependent on numerous pieces of medical equipment (oxygen generators, suction equipment, ventilators, cough assists, nebulizers, dialysis equipment, refrigerators for meds and
This information can be found at: https://www.usa.gov/disability-caregiver. Some government programs pay family or friends of people with disabilities to help with daily activities. This can
A curated list of trusted ALS resources, organizations, websites, and support groups to help patients and caregivers find reliable information and community.
Learn how to recognize, report, and prevent financial exploitation and abuse of ALS patients and other vulnerable adults, with resources and guidance.
Service Dogs and ALS Do you want a service dog, or just a pet? You can’t just buy a dog, then buy a “Service Dog”
Learn how severe yawning episodes affected our son with ALS and the practical solutions we used to ease jaw clenching, eye tearing, biting, and more.
Exposes the use of fake patients in medical equipment demos and shares real ALS caregiving challenges to highlight misleading marketing practices.
Highlights the serious shortcomings of “accessible” public restrooms and shares real experiences, tips, and caregiver support for ALS bathroom access.
Explores palliative and hospice care, end-of-life options like MAID and VSED, and our family’s ALS journey to help others plan with compassion and clarity.
Discover how a thoughtfully designed home addition enhances ALS care, featuring practical modifications like a vertical platform lift for improved accessibility.
Discover effective oral care strategies and assistive tools tailored for ALS patients to maintain hygiene, comfort, and overall health.
Our son Jeremy, who passed away 10.29.21 from ALS, wrote a book (published June 2022), “Never Say Invisible” (https://www.neversayinvisible.com/book/ ). The book discussed discrimination against
Learn about managing constipation, elimination, and urination in ALS patients with effective strategies, assistive devices, and medical solutions for comfort.
Learn about organ and brain tissue donations for ALS research, including the process, benefits, and how to contribute to advancing medical science.
Explore beds and sleeping solutions for ALS patients, including adjustable beds, mattresses, and positioning aids to improve comfort and rest quality.
Discover back braces designed for ALS patients to improve posture, provide support, and enhance comfort for better daily mobility and well-being.
Difficulty swallowing tablets, capsules and caplets Early in our son’s ALS journey, and before he got a feeding tube, he still had some ability to
Introduction This article on my website has two main parts: a general discussion of both our son’s and our own experiences handling marijuana and the
Learn how to prevent and treat pressure sores in ALS patients with effective bandages, treatments, and care strategies to enhance comfort and healing.
Explore communication devices and mounts designed for ALS patients, enabling effective interaction and enhancing quality of life through assistive technology.
Learn about call buttons and switches for ALS patients, enabling effective communication and enhanced safety through accessible assistive technology.
Explore motion and assistive devices for ALS patients, offering support for mobility, independence, and improved quality of life in daily routines.
Discover adaptive devices designed to support hand, wrist, and arm mobility in ALS patients, enhancing daily activities and improving quality of life.
Explore essential breathing equipment for ALS patients, including non-invasive ventilation and respiratory aids, to enhance comfort and quality of life.
Managing oral secretions in ALS is crucial for comfort and safety. Explore effective equipment options to enhance quality of life.
Learn how to organize important documents, legal matters, and personal plans to ensure peace of mind and preparedness for individuals and families facing ALS.
Navigating air travel with a disability? Our guide offers essential tips and resources to ensure a smooth and accessible flying experience.
Discover how bidets and washlets enhance accessibility and hygiene for ALS patients, improving daily bathroom routines.
Helpful insights for ALS caregivers on accessible travel, parking solutions, and overcoming transportation challenges.
Because ALS is a progressive disease, it will continue to get worse. Learn as much as you can about what you will need before you need it so you can be ready for what’s ahead.
Our son was diagnosed with ALS in January 2018, and by the fall of that year, he couldn’t eat, drink, or take medicines by mouth. We didn’t know he was starving and malnourished. He needed a feeding tube ASAP.
When our son moved to a push wheelchair and then to a power chair, we quickly discovered that getting repairs wouldn’t be easy, and not just because of the complicated design of the chairs.
ALS sufferers bite their lips, tongues, and cheeks all the time. Our son was constantly doing this. Most of the biting was caused by violent yawning.
My wife and I became our son’s full-time caregivers. Trying to cope with his needs left us sleep deprived and exhausted. Here was our experience working with home health aides.
Here is a great printout for ALS patients and their caregivers to give to any medical personnel.
A quick list of common pain medications, some of which brought relief to our son. We did a lot of trial and error.
ALS causes facial muscles to atrophy, making it difficult to swallow food as well as saliva. Here is a discussion on drooling, saliva, and mucus and the medical ways we used to deal with them.
We kept all our son’s medications in a box on a rolling cart and developed a system for tracking them.
Numerous medications and treatments have been touted to relieve or even “cure” ALS. I urge extreme caution. We found that many did nothing for our son.
We used two primary kinds of patient lifts for our son: floor-based and ceiling-based. I also include a few others that we didn’t use.
This guide entry discusses all the issues with head drop, along with the equipment we bought or acquired and the equipment I made at home.
My mother-in-law once said, “If you’re having a foot problem, go to a doctor who got an ‘A’ in foot.”
Our son, Jeremy, loved all kinds of physical activities, like snowboarding, skiing, running, rock climbing, and especially sailing.
From our experience taking care of our son, professionals saw him only during an office visit or home visit, so they had just 15-minute snapshots separated by weeks and months.
When our son, Jeremy, had to stop working and go on disability, his employer provided a patient advocate for him. She was a godsend.
ALS researchers and doctors have listed numerous possible causes of ALS: heredity, age, gender, genetics, extreme athletics, smoking, environmental toxin exposure, military service, stress, impacts.
As our son’s condition worsened, we tried a number of shower chairs. Here are the pros and cons of several types.
